Thursday, June 23, 2011

It's Been A Month Since I Blogged?

I realized today that it has been a month since my May 23rd update. The days just fly by and it becomes more and more of a challenge to carve out time for writing. Thank you for your continued prayers, e-mails of concern and encouragement. I will provide an update in reverse chronological order.

We learned yesterday that May's positive fungal culture from my lungs was identified as Penicillium. The sensitivities showed that it is most responsive to the Posaconazole (antifungal that I take daily). Perplexing. It appears although the fungus is present in my lungs that the Posaconazole might be keeping it from going into a full-blown dangerous infection in my lungs. The second best drug choice for this Penicillium fungi is IV Micafungin that I take often, so depending upon what last week's culture reveals, IV antifungals loom. Yuck.

I saw my doctor yesterday because she leaves on vacation tomorrow. We are both concerned because several new problems exist and without the commander-in-chief of my medical team, I am lost. Currently, we are addressing:

-Penicillium fungi identified from lungs and worsening of cough
-Platelets further declined - I now have bleeding gums and bruises from head to toe. My doctors have suspected ITP (autoimmune destruction of my platelets) for over a month now, since my platelets are low but my hemoglobin is normal. Giant platelets were found on yesterday's blood sample, yet another sign pointing to the possibility of ITP. We need to resolve this dilemma.
-Neutropenic for the first time since January
-All of the biopsy stitches were removed yesterday and one site on my back is infected - oral and topical prescription antibiotics are prescribed for that. Earlier in the month, I had three suspicious skin lesions biopsied by my dermatologist. Skin cancer remains a very high risk in leukemia patients such as myself. I praise God that all three sites were benign.
-Continued pain/complications from the fall (more details below). The foot drop (from nerve damage in right leg/foot) is worsening and my right foot "locks" in a toes pointed down position. It is very painful to try to "unlock" the position. I had physical therapy today so I am sore from that.
-I had my most difficult IVIG treatment this week. With the Gammunex brand, I usually do not have many side effects. This week, I was nauseated and had a bad headache the entire eight hours it infused. In the middle of the infusion, the nurse noticed that the "op-site" (clear plastic covering they stick over the iv site) was causing a reaction on my skin - it was blood red and remains very red, so my doctor said to apply prescription steroid cream to that site.

On June 2, I fell down a flight of ceramic tiled steps. I was carrying items in both hands, so I couldn't break the fall and I ended the tumble by hitting my head into the door at the bottom of the stairs. Needless to say, I have been in alot of pain since then and have had to begin physical therapy. With low low platelets, I have been covered from bruises from the fall and the biopsies. I sprained my right wrist and left ankle and messed up my left knee. My doctor told me that I need to use a cane to prevent further falls, but I must admit, my pride is standing in the way of that. We went by the medical supply store to buy a cane  and I developed "cane rebellion" and would not go in - maybe another day. Lil Man takes every bat, stick and I imagine canes and beats on things like Bam Bam of Flintstone fame, so the cane might not work with him.

You might recall that I am claustrophobic when it comes to MRI's. After the fall, the doctor ordered an MRI. The tech put me into the MRI machine and I felt that moment of panic. I asked if she could remove the headphones she had put on me as they made me feel more restricted. She informed me that they had to remain on because of the noise of the MRI. I repositioned my arms and was beginning to wonder if I could stay in the machine for an hour when my new favorite song came on in the headphones. The MRI technician knows to put on my favorite Christian music station and "Blessings" began to play. I know for certain, that the Holy Spirit orchestrated that moment for me, to bring peace to my troubled soul. I immediately calmed and almost fell asleep at one point during the MRI.

The lyrics to "Blessings" by Larua Story:

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things
'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

The MRI report revealed that the fall worsened the four herniated discs that were present prior to the fall; a fifth disc was ruptured by the fall and torn and is the villain responsible for the worsening of the numbness in my leg, loss of strength and increased pain. Normally, my doctor said she would begin with steroid injections into these discs, however, I consulted with a pain management doctor last year and he said I was not a "good candidate" for these procedures, so that door is closed. My doctor arranged for me to begin some physical therapy and other interventions as we sort through other possibilities. The x-rays of my foot revealed no broken bones, however I have injured a ligament in the bottom of my foot and I have plantar fascitis.

I had another infection in my eye since the last update and two skin infections (fungal and bacterial). And a bout with an adrenal crisis caused by a new medication wrap up this month in review.

I remain hopeful and my peace and joy are found in Him, thankfully, and are not based upon the circumstances of this world. I have learned to be content no matter my circumstance (as Paul recommended to us). My oncologist told me, "I have never had a patient who battled cancer for 15 straight years and who never took an anti-depressant or a pain medication like you." He is a Hindu and often asks me about my Source of strength and hope. All glory be to God. He is my source of comfort and encouragement each day. And I know He loves each of you every bit as much as He loves me, so rejoice in that in the midst of your sufferings.

Monday, May 23, 2011

It is About Time for An Update!

I have been a slacker. And a hefty case of writer's block has continued. However, today I am at the cancer center receiving my treatment and this morning's IV steroids have lifted the brain fog and my writer's block was cured as well. I have been blogging away this morning to pass the hours and vowed that I would have an update posted before the end of the IV late today.

Worthy of celebrating and offering a praise to our Heavenly Father, is the fact that I have now not required IV antibiotics or antifungals for infections since mid-January - four months! This is a miraculous improvement for me. I have experienced continued infections but infections that have resolved with oral antibiotics. Not being attached to IVs for weeks at a time each month has improved my quality of life. Pray and believe with me that this record will continue to be broken! I spent much of last summer in ICU or at the cancer center, so I am believing that this summer I will be slammer-free and might even manage a vacation or two.

Last month we made the trip to Ohio State to consult with the leukemia specialist. It was a discouraging trip for us and I have decided against further trips. Research is vital to uncovering cures for diseases such as leukemia. However, it has been my personal experience that when consulting with the larger research centers such as OSU, that sometimes the focus is so strongly placed on clinical trial recruitment, that patient care suffers. Unfortunately, for late stage cancer patients such as myself, we do not even qualify for many of the trials. Recruitment eligibility criteria is stringent and usually my low counts, excessive infection history or history of drug reactions, excludes me from joining a clinical trial. It doesn't take a brain surgeon to know that a patient with my history is not someone that researchers are eagerly lining up to recruit. So we returned, at first, a bit discouraged, knowing that there are really no treatment options remaining there for me. Yet, it didn't take long, for the Holy Spirit to remind me, that I am trusting God to direct my paths and if I have been diverted from that pathway, it is in my best interest.

I developed a case of cellulitis (skin/tissue infection) on my face and an eye infection last month. I was desensitized to Clindamycin, which I have taken and tolerated in the past. Since I do nothing by the book, I broke out in a drug reaction rash all over my body on the third day of taking the Clindamycin. About the same time, I developed some lumps on my legs - being speckled from the rash and with egg shaped lumps, one fellow leukemia patient, diagnosed it as a good case of Easter-a-titis, since all of this transpired the week before Easter. The rash has cleared but the leg lump on my lower left leg is still present. My doctor suspects erythema nodosum. If it enlarges or does not improve, my Infectious Disease doctor said I will have to have it surgically removed for pathology.

My platelets continue to remain low and believe me, I have the bruises to prove it. Lil Man kisses those boo-boos and he is convinced they are then "all better"! What is puzzling to us, is the fact that my hemoglobin is doing well. Normally, as the bone marrow fills with leukemia cells and the marrow function is suppressed, the hemoglobin declines and then the platelets. I located a research paper that suggested in leukemia patients with normal hemoglobin but low platelets, that they be checked for H.pylori. H.pylori is a bacteria found in the gut that often is attributed to ulcer formation. A blood test was ordered and lo and behold, it returned positive for H.pylori - was this the cause of my low platelets? The puzzling piece of this information is that the test is an Ig antibody test. It can reflect that I have H.pylori OR it can be a false positive attributed to the IgG I receive in each month's treatment from 3000  blood donors. If one of these donors was H.pylori positive, that might be why my blood test returned positive. Additional testing will be ordered to make this determination.

PCP is the dangerous pneumonia that can develop in immune compromised patients with low CD 4 counts. My CD 4 count is 159 today which is very concerning (below 200 increases the risk of PCP). My last PCP PCR antigen test had "indeterminate" results. My Infectious Disease doctor said that result might indicate early stage PCP has developed, so we are carefully watching for any worsening of breathing and respiratory symptoms. I also had a positive fungal culture return on lung sputum. We are watching and waiting to determine if the symptoms warrant the introduction of IV antifungals (the drug I have to take 7 days a week for 6 weeks). Please pray specifically for my lungs - a great majority of leukemia patients are killed by respiratory infections - and both fungal lung infections and PCP can be killers. I am trusting the Holy Spirit to prompt my spirit, if I need to more aggressively respond to these two test results.

Thank you for your continued prayers and support. I am blessed.

Signs of the Times: Matthew 24 (The Message)

1-2 Jesus then left the Temple. As he walked away, his disciples pointed out how very impressive the Temple architecture was. Jesus said, "You're not impressed by all this sheer size, are you? The truth of the matter is that there's not a stone in that building that is not going to end up in a pile of rubble."

3 Later as he was sitting on Mount Olives, his disciples approached and asked him, "Tell us, when are these things going to happen? What will be the sign of your coming, that the time's up?"

4-8 Jesus said, "Watch out for doomsday deceivers. Many leaders are going to show up with forged identities, claiming, 'I am Christ, the Messiah.' They will deceive a lot of people. When reports come in of wars and rumored wars, keep your head and don't panic. This is routine history; this is no sign of the end. Nation will fight nation and ruler fight ruler, over and over. Famines and earthquakes will occur in various places. This is nothing compared to what is coming.

9-10 "They are going to throw you to the wolves and kill you, everyone hating you because you carry my name. And then, going from bad to worse, it will be dog-eat-dog, everyone at each other's throat, everyone hating each other.

11-12 "In the confusion, lying preachers will come forward and deceive a lot of people. For many others, the overwhelming spread of evil will do them in—nothing left of their love but a mound of ashes.

13-14 "Staying with it—that's what God requires. Stay with it to the end. You won't be sorry, and you'll be saved. All during this time, the good news—the Message of the kingdom—will be preached all over the world, a witness staked out in every country. And then the end will come.

The Monster of Desecration

15-20 "But be ready to run for it when you see the monster of desecration set up in the Temple sanctuary. The prophet Daniel described this. If you've read Daniel, you'll know what I'm talking about. If you're living in Judea at the time, run for the hills; if you're working in the yard, don't return to the house to get anything; if you're out in the field, don't go back and get your coat. Pregnant and nursing mothers will have it especially hard. Hope and pray this won't happen during the winter or on a Sabbath.

21-22 "This is going to be trouble on a scale beyond what the world has ever seen, or will see again. If these days of trouble were left to run their course, nobody would make it. But on account of God's chosen people, the trouble will be cut short.

The Arrival of the Son of Man

23-25 "If anyone tries to flag you down, calling out, 'Here's the Messiah!' or points, 'There he is!' don't fall for it. Fake Messiahs and lying preachers are going to pop up everywhere. Their impressive credentials and dazzling performances will pull the wool over the eyes of even those who ought to know better. But I've given you fair warning.

26-28 "So if they say, 'Run to the country and see him arrive!' or, 'Quick, get downtown, see him come!' don't give them the time of day. The Arrival of the Son of Man isn't something you go to see. He comes like swift lightning to you! Whenever you see crowds gathering, think of carrion vultures circling, moving in, hovering over a rotting carcass. You can be quite sure that it's not the living Son of Man pulling in those crowds.

29 "Following those hard times,

Sun will fade out,
moon cloud over,
Stars fall out of the sky,
cosmic powers tremble.

30-31 "Then, the Arrival of the Son of Man! It will fill the skies—no one will miss it. Unready people all over the world, outsiders to the splendor and power, will raise a huge lament as they watch the Son of Man blazing out of heaven. At that same moment, he'll dispatch his angels with a trumpet-blast summons, pulling in God's chosen from the four winds, from pole to pole.

32-35 "Take a lesson from the fig tree. From the moment you notice its buds form, the merest hint of green, you know summer's just around the corner. So it is with you: When you see all these things, you'll know he's at the door. Don't take this lightly. I'm not just saying this for some future generation, but for all of you. This age continues until all these things take place. Sky and earth will wear out; my words won't wear out.

36 "But the exact day and hour? No one knows that, not even heaven's angels, not even the Son. Only the Father knows.

37-39"The Arrival of the Son of Man will take place in times like Noah's. Before the great flood everyone was carrying on as usual, having a good time right up to the day Noah boarded the ark. They knew nothing—until the flood hit and swept everything away.

39-44 "The Son of Man's Arrival will be like that: Two men will be working in the field—one will be taken, one left behind; two women will be grinding at the mill—one will be taken, one left behind. So stay awake, alert. You have no idea what day your Master will show up. But you do know this: You know that if the homeowner had known what time of night the burglar would arrive, he would have been there with his dogs to prevent the break-in. Be vigilant just like that. You have no idea when the Son of Man is going to show up.

45-47 "Who here qualifies for the job of overseeing the kitchen? A person the Master can depend on to feed the workers on time each day. Someone the Master can drop in on unannounced and always find him doing his job. A God-blessed man or woman, I tell you. It won't be long before the Master will put this person in charge of the whole operation.

48-51"But if that person only looks out for himself, and the minute the Master is away does what he pleases—abusing the help and throwing drunken parties for his friends—the Master is going to show up when he least expects it and make hash of him. He'll end up in the dump with the hypocrites, out in the cold shivering, teeth chattering."

(Emphasis mine.)

Glorious Day

Much ado has been made by the media about a man's prediction that Christ would return on Saturday. Several people asked me what I thought about the prediction. I scoffed at the thought that anyone who claims to have read the Bible would even begin to state that he or she knows the exact date of Christ's return (the Rapture). Mark 13:32 explains precisely: “But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father." This verse instructs us that not even Jesus, the Son of God, knows the timing of Christ's return - only the Father possesses this information. So the next time you read or hear of someone alerting you about Christ's return, utilize discernment.

I believe there are signs all around us that His return is nearing. There is no doubt, that good can even emerge from this man's erroneous predictions. Recently, many people have paused to reflect on their hearts' conditions since the possibility existed for Christ to return for His children. And that is a positive outcome from his predictions. Everyday, we need to pause to confess our sins and be certain that our hearts are right in the event that Christ should return.

As these Casting Crown lyrics states: "One day He's coming, oh glorious day!"

To listen to this song:

One day when Heaven was filled with His praises

One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now is ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One bringing
My Savior Jesus is mine

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

Triathlon Trek

This weekend our daughter Marissa crossed the finish line at her first triathlon. A triathlon is a daunting task for anyone but as a Type 1 diabetic, it was an achievement of a lifetime for Marissa. As a health care provider, she is well aware of the potential for complications in Type 1 diabetics, so she exercises and trains all the time and her good health is a testament to God's faithfulness to her and her commitment to take care of her body. The swim was 800 meters, she then rode 25 miles on her bike and ran 5 miles.

Her husband, one of our other daughters and her husband, and my husband and me were her Encouragement Team. Once she pedaled off on her bike, we jumped in our car and traveled back roads so that we could be waiting around her half-way point to encourage her on. We had signs in tows and binoculars for scouting her arrival from afar.

These are some photos from the Triathlon. Congratulations, Maris!

Your Great Name

As Christians, we are aware that we should pray "in Jesus' Name". At times, it might almost become habit that we conclude our prayers with "In Jesus' Name we pray". Natalie Grant's song "Your Great Name" has reminded me of the enormity of the power of the Name of Jesus. It is not something to be taken lightly. Jesus' Name brings salvation, healing, freedom, deliverance, and hope, among many other results of the power of uttering and believing in His Name. The line of lyrics that empower me is, "The enemy, he has to leave, at the sound of Your great name." When life's challenges attempt to rob our hope and peace, via the wiles of the enemy, we need to recall these lyrics and cry out in the Name of Jesus against those attacks of the accuser. Be blessed and listen to this song today: .

Lost are saved; find their way; at the sound of Your great name
All condemned; feel no shame, at the sound of Your great name
Every fear; has no place; at the sound of Your great name
The enemy; he has to leave; at the sound of Your great name

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

All the weak; find their strength; at the sound of Your great name
Hungry souls; receive grace; at the sound of Your great name
The fatherless; they find their rest; at the sound of Your great name
Sick are healed; and the dead are raised; at the sound of Your great name

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

Redeemer, My Healer, Lord Almighty
My savior, Defender, You are My King

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

Relay for Life 2011

Photos Top to Bottom:

The luminaria ceremony with the luminarias honoring and memorializing
cancer warriors spelling out HOPE!

Part of our team cheers and claps for my Dad and me as we complete the Survivor Lap.

Our Relay for Life 2011 team photograph.

My two local oncologists - on the left is my radiation oncologist and on the right is my local
A couple of weeks ago our family participated in Relay for Life 2011. Our daughter Marissa worked diligently for the cause and our son-in-law Scott designed the orange (orange is the color for leukemia awareness) shirts for our team. We arrived home from RELAY FOR LIFE at 2 AM since we were scheduled to walk from 11 to midnight. I wonder how we drew that short straw. My Dad surprised me and he and my best friend (both cancer survivors) walked the Survivor Lap with me. The three of us who are cancer survivors wore the purple Survivor Shirts. The son-in-law with his hair spray painted orange is the designer of the shirts and our comic son-in-law. That is not his natural color!

Lil Man kept calling RELAY FOR LIFE "that thingy" . He thought "that thingy" was great fun - balloons, a track to run on, cupcakes, and all kinds of fun for kids. I thought how thankful I was that at his young age of two, his innocence protects him from the gravity of cancer.

RELAY FOR LIFE was held at a local university. The luminaria ceremony was inspiring, heart-wrenching, and hopeful - conflicting emotions all felt at the same time. Cancer patients' families and friends purchased luminaries that were printed with their messages. Some honored those survivors still fighting and others memorialized those who had lost their battle. These were placed around a track that circled the football field, illuminating the night skies. As we turned the third turn on the track, a row of 15 luminarias had my name and messages on them from families and friends. Thank you to all who donated in my honor. It was a memorable event for all of us.


This Mandisa song, "Stronger" is a new favorite of mine. In the midst of unrelenting storms of life, we can be reassured that He remains in control and ever-present. To stay afloat, walking on water, our focus must remain on Christ and not on the storms that threaten to swallon us. Enjoy!

Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better

Believe me
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares
'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger

The pain ain't gonna last forever
In time it's gonna get better
Believe me
This is gonna make you stronger

To listen to this song:

Wednesday, April 6, 2011

Food for Thought

"Whenever a man is ready to uncover his sins, God is always ready to cover them." - Unknown

"Pray as if everything depended on God, and work as if everything depended on man." - Francis J. Spellman

"Jesus can turn water into wine, but He can't turn your whining into anything." - Mark Steele
"Guilt is concerned with the past. Worry is concerned about the future. Contentment enjoys the present."
- Unknown

"I make it a rule of Christian duty never to go to a place where there is not room for my Master as well as myself." - John Newton

"Death is not a period but a comma in the story of life." - Amos J. Farver

Monday, April 4, 2011

The Best Medicine

I have a prescription for the best medicine for whatever ails you. This medicine relieves stress, brings laughter to enhance immunity, and makes the tiredest body jump out of the bed. I must warn you that insurance will not cover this medicine. And it is not accessible by everyone.

That medicine is the love and companionship of a grandchild. Lil Man and I have been together almost every week day since he was six weeks old and his Mommy had to return to her career. He is now almost two and one-half years old. What a journey this has been for me. When he naps in my arms, I stroke his curly hair and tell him that he will never know the life he has breathed into me. He will never know the laughter and joy he has given to me on days that otherwise would have been filled only with pain and suffering.

I know this will sound like a typical Grammy remark, but we stand in awe and amazement at what he says and does. In the words of Aunt "Tef" - "He has never been a Terrible Two - he is a Terrific Two!" I agree. Lil Man has a sense of humor that I have never witnessed in a two year old. His intelligence is impressive (even according to his doctor). And we have such fun together.

Everyday is a new adventure. When I pick him up in the mornings at his Mommy's office, he talks all the way home on our twenty minute drive. I told a friend that sometimes I develop "conversation fatigue" with Lil Man who knows how to chatter (that might be a genetic inheiritance from his Mother). He is really singing these days and those musical notes are precious to me. Having a grandson after three daughters has been an interesting experience. Today we took small pieces of lumber to tie on the top of his Crazy Coupe so that he could pretend he was driving home from the lumber yard. Basketball goals, T-Ball sets, four-wheelers and monster trucks have replaced the home once filled with enough Barbies to populate a small nation and girly girl clothes and trinkets.

I ask him, "How much does your Grammy love you?" And he replies, "A WHOLE BUNCH!" Then he tells me, "Grammy, me love you a whole bunch". Love of a grandchild is a unique bundle of emotions and joy that continually grows just like the child to whom that love is directed. I am grateful beyond words for living long enough to experience "Grammy-dom". I am just waiting to see if more little ones join our family and if so, how many will be added. I might have to buy a bigger vehicle if this daycare experiences a population explosion.

Love You, Lil Man!

Writer's Block Improving! An Update: April 4, 2011

I know, I know, I have been silent on the blog for over a month. A combination of a significant case of writer's block and just needing a leukemia vacation have contributed to the absence. So in the future, remember this fact: if I disappear from my blog, it usually means I am doing pretty well and just living life or I have kicked the bucket!

We are preparing for an upcoming trip to Ohio State to see my leukemia specialist. As my last post alluded, I was having significant drops in my counts and we scheduled the appointment to determine the cause of the declines. Marrow failure was in the forefront of our concerns. Amazingly, miraculously, my counts began improving through the later part of March. My hemoglobin reached 13.6 - higher than it even was at my diagnosis - almost fifteen years ago. GO BONE MARROW! That victory was short-lived because last week my counts declined again. The roller coaster ride has been relentless in 2011.

I believe the radiation was worth the risks. My lymphocytes (cancerous) always comprised about 98-99 percent of all of my white blood cells. That percentage is now running 40-50% which is a significant reduction in my tumor load.

I have officially made it over two months without ANY IV antibiotics. Of course, God deserves all the credit for this. I believe He has directed my steps down a path with many stops along the alternative medicine path. A combination of oil of oregano, olive leaf extract, grapeseed extract, elderberry and goldenseal seems to be eradicating infections via a natural pathway versus antibiotic overload. Praise God.

At last, my flu quarantine ended and I have spent the past week as free as a bird! I had been at home since Christmas Eve dinner and church services. The only exceptions being "vacations" to the hospital or the doctors' offices. Grocery shopping, receiving a hair cut and style, and running errands never had such broad appeal. I am free at last!

Another major praise is that my very wise family doctor recommended a supplement (backed with scientific research) for the long-standing, unbearable fatigue I have suffered with leukemia. I decided I would add it to my protocol and I have had an amazing few days with increased energy and stamina! Please pray this will continue as it the closest I have felt to "the old me" for a very long time. Heaven knows, as the nanny to my two year old grandson, energy is a premium commodity!

The heart monitor I wore for twenty-four hours in late March did not reveal any serious arrythmias to which we could attribute my heart palpitations. I am experimenting under the guidance of my family doctor with potassium and magnesium dose adjustments to see if the palpitations improve. There were periods of very low heart rates recorded on the monitor (down to 24 beats per minute) but I declined further testing. When God decides the old ticker should stop ticking, nothing will stop it. I am trusting Him.

Thank you for your continued prayers. I was reflecting the other day about the family, friends, churches and individuals who have literally prayed for me for almost fifteen years. Those are some faithful prayer intercessors, isn't it? I am humbled that the Holy Spirit has brought my needs to the remembrance of so many believers for so many years.

A New Favorite

Just in time for Easter, I discovered Casting Crowns' song Glorious Day. The lyrics replay over and over again in my mind and spirit. I am inspired and grateful for what my Savior has done for each of us - dying on a cross for the forgiveness of our sins.

Go to You Tube to listen: .

The lyrics are:

One day when Heaven was filled with His praises

One day when sin was as black as could be

Jesus came forth to be born of a virgin

Dwelt among men, my example is He

Word became flesh and the light shined among us

His glory revealed

Living, He loved me

Dying, He saved me

Buried, He carried my sins far away

Rising, He justified freely forever

One day He’s coming

Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain

One day they nailed Him to die on a tree

Suffering anguish, despised and rejected

Bearing our sins, my Redeemer is He

Hands that healed nations, stretched out on a tree

And took the nails for me

One day the grave could conceal Him no longer

One day the stone rolled away from the door

Then He arose, over death He had conquered

Now He’s ascended, my Lord evermore

Death could not hold Him, the grave could not keep Him

From rising again

One day the trumpet will sound for His coming

One day the skies with His glories will shine

Wonderful day, my Beloved One, bringing

My Savior, Jesus, is mine

Thursday, March 3, 2011

Urgent Prayer Request: March 3, 2011

I apologize for the blog absence. It seems as though we repair one problem and then another problem arises. Today, I ask for your focused prayers for my bone marrow and the recovery of my blood counts. For the past three weeks, my blood counts have been on a downward spiral and they have reached very concerning levels. I have required Neupogen injections the past two weeks to improve the severe neutropenia. Today my Absolute Neutrophil Count is only 300.

Our main concern is that my bone marrow could be failing - either from the leukemia or from the radiation I have received. I cannot survive without a functioning bone marrow. When I made the decision to try radiation last fall, I was fully aware of the risks - one being marrow failure - however, the risks of radiation appeared to be less to my medical team and me than the risks of chemotherapy. Difficult decisions to make when there is no good answer.

I request urgent, fervent prayer today that my marrow will be restored and my counts will improve. I ask for prayer that God will supernaturally protect me from life-threatening infections during this time of low white blood counts. I ask for wisdom for my physicians and for God to open a door for me to receive a bone marrow biopsy - what my leukemia expert physicians say that needs to be performed. If I cannot obtain the biopsy locally, I anticipate having to travel to a cancer center in the near future.

I will try to keep the blog updated more this month.

Monday, February 14, 2011

Reflections on Prayer

I have been reading Andrew Murray's The Ministry of Intercession, originally written in 1898. This book has blessed and encouraged me to focus more time and dedication to prayer. Prayer truly is our link to God and to believe we are too busy or too self-sufficient to need prayer time in our lives, is robbing ourself of a vital necessity.

Some of the quotes that I have highlighted thus far in the book include:

It is only in a life full of the Holy Spirit that the true power to ask in Christ's Name can be known.

Christ actually meant prayer to be the great power by which His Church should do its work, and that the neglect of prayer is the great reason the Church has not greater power over the masses in Christian and in heathen countries.

There must be more definite and persevering prayer.

The law of God is unchangeable: as on earth, so in our traffic with heaven, we only get as we give. Unless we are willing to pay the price, and sacrifice time and attention and what appear legitimate or necessary duties, for the sake of the heavenly gifts, we need not look for a large experience or power of the heavenly world in our work.

If we allow this one matter, unfaithfulness in prayer, to convict us of the lack in our Christian life which lies at the root of it, God will use the discovery to bring us not only the power to pray that we long for, but the joy of a new and healthy life, of which prayer is the spontaneous expression.

It was intense, continued prayer that prepared the disciples' hearts, that opened the windows of heaven, that brought down the promised gift.

Direct, definite, determined prayer is what we need.

Prayer was made of the Church, without ceasing to God for him. That prayer availed much; Peter was delivered.

How clear the two great truths stand out: where there is much prayer there will be much of the Spirit; where there is much of the Spirit there will be ever-increasing prayer. So clear is the living connection between the two, that when the Spirit is given in answer to prayer it ever wakens more prayer to prepare for the fuller revelation and communication.

God still seeks for men and women who will, with all their other work of ministering, to specially give themselves to persevering prayer.

To consider how many years have passed since Murray originally penned these reflections, illustrates how timeless and vital prayer is to each and every generation. May we commit anew today to a life of prayer.

Half Way Through February

Fourteen of February's days have passed and I have not been admitted to ICU or been to the cancer center. That is pretty amazing for me! After January's bumpy start to 2011, the break has been more than welcome. I truly needed a break from all things leukemia. That probably best explains my absence from the world of blogging - my apologies to those of you who have e-mailed with concerns about my absence.

My insurance and prescription card provider (Medco) have done their best to irritate me and have caused me much grief this month. Medco has decided to reject prescription after prescription. They rejected my antifungal and I was without it for three days, so I am battling a fungal sinus infection due to their negligence. Don't you just love it when the insurance "gods" try to outguess our doctors about what medications we need?

I did go to Indianapolis last week and saw my Infectious Disease doctor. He is concerned about the fungal infection in my sinuses since they can spread to the brain (and God knows my brain is about the only body part that still functions well). He said if I don't improve soon, I will have to resume IV antifungals everyday. So, please pray for the infection to improve and for Medco not to reject my antifungal tomorrow when I go to refill it. My Infectious Disease doctor, who was consulted throughout January's quandaries, commented on what a miracle it is that I survived all that I did in January.

I probably have never sensed such a debt of gratitude in my heart to God as I have this month. Time to reflect on all that I survived and conquered, with the help of Almighty God, has been humbling and awe-inspiring. Thanks, God! (And thanks to all of you for your prayers of intercession for me.)

Sunday, January 30, 2011

A Quick Update: January 30, 2011

Last week drew to a close and I completely the daily IV antibiotics. Gradually, I have been able to wean off the oxygen and my breathing is improving daily. Tomorrow, I will receive my all day IVIG treatment and then February will dawn on Tuesday. And I have officially declared February as the "I will not be admitted to the hospital or require IV drugs or blood transfusion Month!"

I am always hard on myself. I expect to be up, whizzing around and full of energy. Then I paused in reflection yesterday about January. I spent fifteen of thirty-one days in ICU, at the cancer center or receiving outpatient IVs at the hospital. I received six blood transfusions. I had an ablation. I received two IVIG treatments. Two drug desensitizations were required. And a week of IV antibiotics had to be tossed into the plan. No wonder I am tired - I need to learn to be more accepting of my body and what it can still accomplish amidst staggering medical demands.

I thank you for your prayers. January is drawing to a close with my heart being filled to overflowing with gratitude. God has truly protected me, healed me, and encouraged me through it all.

Through It All
Andre' Crouch

I've had many tears and sorrows,

I've had questions for tomorrow,

There's been times I didn't know right from wrong.

but in every situation,

God gave me blessed consulation,

That my trials come to only make me strong.


Through it all,

Through it all,

I've learned to trust in Jesus,

I've learned to trust in God.

Through it all,

Through it all,

I've learned to depend upon His Word.


I've been to lots of places,

I've seen alot of faces,

There's been times I felt so all alone.

But in my lonely hours,

Yes, those precious lonely hours,

Jesus let's me know that I was His own



I thank God for the mountains,

And I thank Him for the valleys,

I thank Him for the storms He brought Me through.

For if I'd never had a problem,

I wouldn't know God could solve them,

I'd never known what Faith in God could do

To listen to this song:

Quotes to Ponder: January 30, 2011

"The great thing to remember is that, though our feelings come and go, His love for us does not."

-C.S. Lewis

"A crushing hurt comes to our heart and the sympathizing, scarred hand of Christ presses the wound; and just for a moment, the pain seems to intensify ..... but finally the bleeding stops."

-Beth Moore

"The essence of Christianity is not about religion at all, but about the person of Christ. Religion is a dead, man-made thing, and at the heart of Christianity is something else entirely - God, Himself, alive."

-Dietrich Bonhoeffer

"But why, if the answer to prayer is so positively promised, why are there such numberless prayers? We found that Christ taught us that the answer depended upon certain conditions. He spoke of faith, of perseverance, of praying in His Name, of praying in the will of God. But all these conditions were summed up in the one central one: 'If ye abide in Me, ask whatsoever ye will and it shall be done unto you'.

It became clear that the power to pray the effectual prayer of faith depended upon the life. It is only to a man given up to live as entirely in Christ and for Christ as the branch in the vine, that these promises come true."

-Andrew Murray

A Prayer for Today: January 30, 2011

Precious Father,

We love you and praise You for all that You are to each of us. You are our Savior, our Healer, our Redeemer, our Deliverer, our Provider, and the Anchor of our souls.

When everything in this world shakes and is unstable, You remain that Rock of Ages. You are never changing and we are grateful that we can always count on you to be the one fixed object of our affections.

Thank You for the forgiveness that you so lovingly give. May each of us uncover a new found purpose in our lives - a God assigned purpose - may our life heartaches and heartbreaks never drown out our purposes here for You and Your Kingdom. May each of us be inspired today and allow Your light to shine through our lives, so that others will come to know You as Lord and Savior.

There is no one like You, Father. I am certain that many who will read this will be suffering today. I am even more convinced that none of these concerns will ever separate us from Your love, Lord. May disease, depression, heartache, pain, financial burdens, and every other type of challenge be addressed by You. May each of my family members, friends, and blog readers be reminded tonight of the deep, deep love and affection that You have for each of us. Love overcomes all.

In Jesus' Mighty Name I pray. AMEN.

Thursday, January 27, 2011

No Matter What

The other song that has been added to my favorites list this week is Kerrie Roberts' song No Matter What.

I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,

No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.

When I’m stuck in this nothing-ness by myself, I’m just sitting in silence,
there’s no way I can make it without Your help, I wont even try it.
I know You have Your reasons for everything,
so I will keep believing, whatever I might be feeling,
God you are my hope, and you'll be my strength,

No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
Anything I don’t have You can give it to me, but it’s ok if You don’t,
I’m not here for those things, the touch of Your love is enough on its own,
no matter what I still love You and I’m gonna need You

No matter what I’m gonna love you, no matter what I’m gonna need you,
I know that You can find a way to keep me from the pain but if not, if not, I’ll trust You,
I know that You can find a way to keep me from the pain, but if not, if not,
I’ll trust you, no matter what no matter what no matter no matter what

To listen:

You're Not Alone

Earlier this week, around 4 AM, as I waited in ICU for morning to dawn, this Meredith Andrews song played from my favorite Christian music station. So many times, God speaks to my spirit through music. These words washed over my soul and encouraged my heart. I pray they will encourage you tonight - remember, you are never alone. And I was not alone in that ICU room.

You're Not Alone
Meredith Andrews
I search for love
When the night came and it closed in
I was alone
but you found me where I was hiding
and now I'll never ever be the same
It was the sweetest voice that called my name

You're not alone
for I am here
let me wipe away your every fear
My love, I've never left your side
I have seen you through the darkest night
and I'm the one who's loved you all your life
All of your life

You cry yourself to sleep
cause the hurt is real
and the pain cuts deep
All hope seems lost
With heartache your closest friend
and everyone else long gone
You've had to face the music on your own
but there is a sweeter song that calls you home

You're not alone
for I am here
let me wipe away your every tear
My love I've never left your side
I have seen you through the darkest nights
And I'm the one who's loved you all your life
All your life

Faithful and true... Forever
For my love will carry you....
You're not alone
for I... I am here
let me wipe away every fear... Oh yeah
My love I've never left your side
I have seen you through your darkest night
Your darkest night
And I'm the one who's loved you all your life
All of your life

It's the Best Day Ever!

One of our grandson's favorite new songs to sing in his two year old singing voice is, "It's The Best Day Ever!" So I echo those lyrics today. Today (and everyday) is the BEST day ever. No matter what life brings our direction, life is so precious and priceless, we need to be reminded to celebrate each moment we have air in our lungs.

This is a post about praises to the Most High God - my Everything. I praise Him for what He has carried me through the past 48 hours. Forty-eight hours ago, I was at the cancer center, receiving my IV antibiotic. The nurse alerted me that my hemoglobin was down two points from Monday. My family doctor told me to go straight to the gynecologist office since the blood loss has continued to be severe. So my husband picked me up and took me to her office. The news was grim. She told me that if we did not intervene, despite the risks of infection and reactions for me, that this blood loss was going to result in my going into shock and possibly dying from it. She told me to go home and pack my bags and medicines and report to ICU. An uterine ablation was scheduled for the early morning hours and I was type and cross matched for the search for more blood for transfusions to be located.

One would think that a night alone before surgery in the dark and quiet of an ICU room, would arouse fear and trepidation in one's heart. I only slept for an hour but spent the rest of the night praying, listening to my praise and worship music and reading God's Word. I sought His perfect peace and courage to face the next day. Since I have so many drug reactions, the concerns were about how to sedate me and how to prevent infection risks. I asked God for the courage and peace to not to be put to sleep and to just ask for a local Lidocaine injection.

They rechecked my hemoglobin after midnight and alarmingly, it had dropped even further and was approaching the dangerous 5 (normal range 12-16) level. Discussion was made by the physicians involved and they elected to perform the procedure and then follow it with two transfusions of packed red blood cells. (Again, I thank all of you blood donors!)

A bit before 8 AM yesterday my beloved family physician arrived at the hospital and told me that she was going to surgery with me. Talk about an answer to prayer - she alone knows all of my reactions, what to do with the reactions, and everything about my body. This dear, precious doctor went to the operating room with me and left her practice. She sat right beside my head, holding my hand and gently telling me what was happening, each step of the way. The perfect peace of God was so intense in that operating room that I just put my MP3 ear buds in my ears with my worship music in the ear the doctor was not using to communicate, prayed and I made it without being sedated! When I was finished, the anesthesiologist said, "If I just had that done to me I would've died without anesthesia!" Then he said I could even bypass the recovery room since I had not been sedated and return to my ICU room! What the Great Physician can do with us when He is the Chief of our Medical Teams.

In addition to the other very particular requirements that my blood must meet, this time the irradiated, CMV negative, leukodepleted blood was also washed. My very wise retired NIH oncologist, Dr. M., told me after the four transfusions earlier this month, to have my doctor have the blood washed. I struggle so hard with reactions to blood products. Washing the cells this time made such a difference - no reactions and I tolerated faster rates so the entire units could be infused without any wasting. (It is challenging to envision the person who had to wash each one of those little red blood cells, isn't it?) :-)

The plan on Tuesday was for me to stay until Friday in ICU and then return home for the weekend and receive IVIG on Monday. God had His plan ....they wheeled me out of ICU at 10 PM last night and I slept like a baby at home. Isn't that astounding? I'm very weak still and I am typing this from the cancer center since I had to return for my IV antibiotics today (and tomorrow).

Today, on my drive here, both my family physician and the gynecologist contacted me within an hour of each other, to tell me the uterine biopsy is BENIGN!!! YAY GOD! Such a relief.....

And more good news - my hemoglobin is 10 today! Just two more points and I am "normal". (Those near to me might debate if I am ever "normal"!)

Your prayers for me were apparent. Once again I am humbled and I stand in amazement at what He has pulled me through this time. Despite what unreal, challenging weeks these have been, God has shown Himself mighty over and over again. To God be the glory . To you I send my gratitude and love.

Soon it will be February and Stacie is going to be healthier and stronger and not be admitted to ICU or have to go for outpatient IV's on any day in February! AMEN?

Tuesday, January 25, 2011


Praise God, the fourth antibiotic FINALLY appears to be making small improvements. I inhaled and exhaled a normal breath overnight. I never thought breathing could feel foreign to me but it did last night. We take breathing for granted until we cannot inhale and exhale. What a glorious feeling to breathe. Way to go God!

My cough has lessened and the oxygen levels have improved. I am still experiencing shortness of breath but I think it is probably more related to the low hemoglobin now instead of the pulmonary infections.

The blood loss needs to stop now in Jesus Name or the doctor said I will have to be admitted for more transfusions. Please agree in prayer with me that can avoid that. They will check a daily blood count in an effort to catch the hemoglobin before it drops as dangerously low as a couple of weeks ago.

This month's need for blood made me once again reflect on the selfless people who donate blood. If you are a blood donor, we thank you from the bottom of our hearts. Each month I require the blood product (immunoglobulin) donations of over 3000 people. Then when critical times emerge for cancer patients, red blood cells and platelets become life-saving resources. If you are a donor, thank you. If you are considering blood donation, I encourage you today to give the true gift of life.

I will go for IV Tobramycin this afternoon at the cancer center. Our oldest daughter is helping me today so Lil Man will be here soon with her. He is the best medicine!

Monday, January 24, 2011

Please Pray ...... And Then Shout a Praise!

Have I ever been slothful about updating the blog! Right now, trying to remain alive and tend to all things medical is consuming almost every thought and day. As with the last update, my mind is swarming and I cannot even determine where to begin. So I will begin with this - I am still trusting God. I still have faith that He will sustain me and muliply my days. Do I wish God would reach down tonight, touch my body, heal me quickly and relieve my pain and suffering? You bet I do. Yet, I know as terribly challenging as my life is right now, that He is holding my arms up, cheering me on, saying, "You can do this, Stacie. Don't give up. Keep fighting. I am right beside you."

Since November, these two or three months have rated at the top of my challenging scale. I have remained acutely aware of one fact - I am gracious beyond words when I am so ill and I cannot request prayer - to know that so many of you are daily interceding for me in prayer to our Father. I know if I disappear from blog-a-sphere, many of you are checking in and the Holy Spirit is prompting you that I am in need. It comforts me when I am too ill to write and my brain is too oxygen deprived to think, to know that my empty written words are not even needed for the Holy Spirit to rally my prayer warriors on my behalf. God does so much better when we just step out of the way, doesn't He?

After my last update, more test results returned pointing to worsening of my already compromised immune system. I knew this was a possible risk when I began the radiation. Yet, it was one of those gut wrenching decisions I had to make. If I didn't treat the leukemia, it would threaten my life. If I did treat the leukemia, my immune system would take a beating. The consensus is that my immune deficiency is now "profound" and my radiation was officially suspended. A portion of my spirit was so disappointing for all of us knew that radiation was my "last chance" at knocking back the leukemia. (But don't dispair - God can use radiation even when it is not being actively administered to my body - I am saving the good report for the last paragraph - kind of like a cliff hanger in a good novel!)

On Friday, Mom and Dad took me to the hospital for tests. I worsened overnight on Thursday - higher fevers, declining oxygen levels, and the coughing/shortness of breath grew worse. My doctor suspected a blood clot in my lung because of my history of PE (pulmonary embolus) and due to the fact that I have been taking estrogen for the blood loss (clots are a risk of estrogen). Thankfully, the test was negative for the blood clot but the waiting for results was a bit tedious.

With no blood clot to blame for the worsening of symptoms the typical "work up" was started - blood cultures, sputum cultures, PCP silver staind, CMV antigen, fungal stains and cultures. Many of these tests take time to produce answers and we do not have the luxury of time right now. My doctor told me that if I continued to decline, she said she would have no choice but to put me back in ICU and began broad spectrum antibiotics, antivirals and antifungals while we wait on the test results. The concern remains rightfully intent and concerning that the CD4 count being so dangerously low at 62 (below 200 is considered extremely dangerous) that PCP is lurking and evading our attempts to identify it. I have been told that with my condition and that CD4 count, if PCP is detected, I could have a 50/50 chance of surviving it. But despite these dire verbal warnings, I believeonly God holds the number of days planned for my life.

Later Friday, the doctor increased steroid doses and added at-home nebulizer (breathing) treatments for me along with oxygen.Temperatures, low oxygen levels and wheezing continued and by Saturday morning, the decision was made to send me to the hospital for desensitization to IV Tobramycin. The doctor also reordered all of the cultures and stains we had done on Friday to be repeated. Research revealed that a simple blood test known as LDH is sometimes used to help diagnose PCP. If LDH is elevated it "can" be an indicator of PCP. Nothing definitive, but as medical detectives, we search for whatever clues we can find. My LDH level was negative, so that "clue" gave us a bit of relief. A bronchoscopy is our one remaining, truly accurate way to identify what is going on in my lungs. I detest the bronchoscopy (scope downt throat into lungs), but it remains a looming option.

When immune compromised patients have pulmonary symptoms present, we cannot assess our condition by fevers. It takes an immune system that is intact to mount fevers and I can be very ill and not present with a fever. Instead, monitoring the oxygen saturation levels is a more reliable method to assess worsening of infection. The doctor had my oxygen levels monitored all day Saturday at the hospital and since I have oxygen at home, she decided I was safer to go home and sleep in my own, less germy bed and return to the hospital on Sunday morning. I found a delicious cinnamon tea and I begin brewing that left and right. The steam and heat from it are soothing to my lungs and feels as though it opens up the airways some when I inhale it. We returned to the hospital again on Sunday morning to receive more IV medicaitons.

Overnight last night, the respiratory problems continued. I have never had a pulmonary infection that "felt" like this one or that has been so long-running as this infection. It has been my nemesis for two weeks. I began chilling around 1 AM - we know that when I have chills and rigors, it is time to go to the hospital since it can indicate sepsis or other serious complications for me. I piled on blankets and prayed - I didn't want to have to awaken Kevin or my doctor at that hour of the night and sometime while praying, the chills must have stopped and I dozed off.

I e-mailed my doctor around 6 AM and by 8 AM, she called me and had already consulted with my Infectious Disease doctor. There are not many doctors like dear Dr. S. She worked laborously all weekend, arranging IVs, desensitizations, medications, and my care. God certainly blessed me with many wonderful medical professionals who tread this journey with me.

PCP (p. carinii pneumocystic pneumonia) remains one of the biggest threats to my life with the even deeper immune suppression that the radiation has inflicted. Today, the Infectious Disease doctor said that he believes that I have another staph infection in my lungs (what I had in June when I was in ICU for a weeek). So I returned to the cancer center today and they desensitized me to Cleocin (antibiotic) and then proceeded with the planned IV Tobramycin (antibiotic). He warned us that I am in a position to develop a c.diff  infection - a serious complication of the colon when too many powerful antibiotics are being used. I have battled c.diff  before and I would prefer not to repeat that experience. My doctor put me on powerful probiotics that I will take every time that I take the Cleocin.

The Infectious Disease doctor also surprised us by telling my doctor that there is alot of H1N1 (swine flu) in Indiana this year. We were shocked with that information - I thought H1N1 had been buried last year. Afterall, the 24 hour news stations are not touting H1N1 like every story reported on this time last year. To err on the side of caution, he ordered a swab to look for any signs of influenza in me although I am not symptomatic of that and he said it was a very unlikely cause of the breathing problems. He said it would be too bad if we overlooked something like that as the source of the pulmonary problems. There should be an answer on that tomorrow.

Unfortunately, the blood loss continues. My hemoglobin rallied to 12.0 (finally to the normal range) on Monday and has been on a fast descending trajectory this week and is 9.0 today. Everyone keeps asking me what are the doctors going to do about the blood loss. Good question. There are options here - all with significant risk for me - however, we cannot even begin to consider those options and difficult decisions until I can breathe better and correct the pulmonary concerns. If the blood loss doesn't cease soon, there will be no alternative but to transfuse me again. Please pray specifically for God to control this "issue of blood".  We read of Him healing the lady with the "issue of blood" in Mark 5 and he told her after she was healed, "Daughter, your faith has made you well." Lord, let my faith and trust in You not waiver in the midst of all of this suffering and turmoil.

After this long-winded January in review, I want to close with a praise. All of these complications - respiratory, bleeding, infections, in and out of hospitals - have attempted to blot out a very good report. And I believe it is appropriate to close this post with that news. Somehow, someway (God's Way) as we have been utterly consumed with this chaos known as our lives right now, God has been working and using the radiation to whomp the leukemia. My radiation oncologist had told us that he anticipated for the radiation to continue working for a couple of months after the last treatment (in December).

God has been at work - even without my traveling for radiation -  we have watched my spleen shrink more; we cannot locate any enlarged lymph nodes in my body; and on Monday, I had an amazing blood report. The cancerous lymphocytes always would run around 98-99% of the total white count (normally should be around 40%). And my lymphocyte percentage was down in that 40-50% range. That is significant. I will be eager to closely review my response once all of these other complications have been resolved to discertain what degree of remission of the leukemia has been achieved.

My family doctor told me the other day, "Stacie, when are we going to celebrate that degree of remission that you have achieved?" And it dawned on both of us that we have been so engaged trying to keep me alive from all of these other dangers, that the radiation just continued to work behind the scenes on the leukemia. The one lymph node on the left side of my neck has never disappeared in 14 years with 5 different chemotherapy protocols. And I cannot find that little (big) rascal!

Praise God with me about this good news that is trying to be recognized among all of the negative reports. I am praying that God will deliver me once again from these current serious threats to my life and I will be able to be assessed and learned that the leukemia has been given the biggest black eye that we could deliver to the enemy of my health.

I told you it would be a cliff hanger closing! Thank you for your continued prayers and words of encouragement.

Sunday, January 9, 2011

Lag in Blog Updates: Please Pray

My apologies for the long delay with my updates. It has been a brutal start to 2011. I don’t even know if I can recall everything I need to share. I thank Tina for sending out a brief request for prayer this week when I was admitted to ICU.

On December 30th, I had a planning CT for my radiation – supposedly just of the abdomen but I suddenly learned on Monday, January 3rd that a pelvic CT had been done and numerous concerns were discovered. A large mass and a smaller one were discovered in my uterus. And two cysts were on my ovaries. The CT report and my oncologist told me I needed immediate gynecologic review to rule out additional cancers. I had been struggling with abnormal bleeding and it had worsened before the end of the year.

My blood counts were marginal on Monday, but the radiation oncologist proceeded with radiation. I also received my IVIG treatment on Monday.

On Tuesday, I saw my family doctor who examined me and was very concerned. Fortunately, the cardiac concerns seem to be checking out as a repeat EKG was “perfect”. Thank, God, for that good news. My hemoglobin was treading downward and weakness was increasing.

On Wednesday, I went for two pelvic ultrasounds. Good news emerged with those – the large mass was a mass of blood clots and the ovarian cysts appeared benign. Later that day, an ovarian cancer marker test returned as negative. Great news and praise for those concerns not to be cancerous but the amount of blood loss was escalating and I knew I was getting in danger.

My theory for these problems is that the radiation has damaged my left ovary (since it is within the radiation field). The ovaries produce estrogen and estrogen helps to regulate cycles. Also, some estrogen is produced in the kidneys and they have been irradiating my left kidney also, which lies behind my spleen. Thus, the massive blood loss has the potential to be radiation related. If this theory is proven true, the continuation of my radiation treatments will hang in the balance.

By Thursday, I was much worse. Our oldest daughter came to stay with me during the day and by afternoon; I was using oxygen and could barely walk from chair to chair. She took me to the doctor late in the day and as soon as the nurse saw me, she ran for the doctor. My pulse was 140, my lips and nail beds were colorless and she said that I had no choice but to be admitted to ICU. When we arrive at the hospital, my hemoglobin was down to 6.3 and since active blood loss was occurring, the doctor said the realistic hemoglobin value was in the range of 5. During 14 years of leukemia and chemotherapy (which always affects hemoglobin levels), I had never reached that dangerous level.

Obtaining units of blood for me is a challenge. Since I receive the IVIG blood-based infusions every month, typing blood for transfusions becomes more complicated. Also, all blood that I receive must be irradiated, leuko-depleted, washed and CMV negative. The blood could not be located locally and was finally located in Indianapolis and a driver brought it to us. The first of four transfusions began late Thursday night. As predicted, the hemoglobin level was in the 5 range because even after the first transfusion, the hemoglobin level did not budge from the 6.3 reading from Thursday afternoon. I began running fevers so antibiotic were added to protect me.

On Friday, I received two additional blood transfusions. I have had past serious blood transfusion reactions, but thankfully, the first three transfusions were flawless. We used plenty of premedications and very slow infusion rates. The blood loss continued to be so significant that we could not keep up with it even with transfusions. Another consultation was made and the medical team decided despite the risks of dangerous blood clots from IV estrogen, that we had no other choice. Normally, six IV doses are given for these situations but the doctors decided to try only two since I have had a blood clot in my lung before (PE). Almost instantly after the second IV, the blood loss stopped. I was so relieved but by Saturday, the blood loss resumed, hemoglobin levels remained low and I remained in ICU and on oxygen. A fourth blood transfusion was ordered and more blood was located in Indianapolis for me. Unfortunately, we decided to increase the infusion rate and it resulted in a reaction to the transfusion. I was so sick yesterday. Low dose estrogen was started, in an attempt to stop the blood loss without as great of chance of blood clots that could cause a stroke, pulmonary embolus, or heart attack.

My hemoglobin finally made it to the 8 range yesterday evening and the doctor decided to discharge me since the germy ICU environment is a risk to me. I left last night, so sick and still having so many problems to resolve. I will not able to receive radiation this week (and perhaps I will never receive anymore). I know of at least two procedures/biopsies pending for this week. If my hemoglobin continues to decline, more transfusions will be in my history.

My NIH oncologist also reminded us today that with four blood transfusions, my own clotting factors could have been altered. So some testing for this will happen this week.

And all of these new problems rest solidly on top of the mountain of other health challenges related to leukemia and infections. Please pray for my family, me and my medical team. Please pray that I will not develop blood clots from the estrogen (IV and oral). Please pray that the  search for additional malignancies will continue to reveal nothing cancerous. Please pray for the blood loss to cease and the need for transfusions will conclude. Please pray for strength and grace to stand up under the enormous strain of so many things going wrong in my body.

I am reminded of this Scripture from Romans 4:

19 And not being weak in faith, he (Abraham) did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. 20 He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, 21 and being fully convinced that what He had promised He was also able to perform. 22 And therefore “it was accounted to him for righteousness.”

Abraham and Sarah longed for a son – but they were so very old. They did not look at their situation or consider the condition of their bodies. They didn’t waver at the promise of God. They were not doubtful or unbelieving. They grew in Faith and praised God. And that promised son was the answer to their prayers.

May I be able to replicate their faith-filled actions and witness this broken, failing body,  restored and perfectly functioning. Please join me with prayers that are filled with praise, belief, and void of doubt and disbelief.